The Neurological expert who gambles and the exam that wasn’t.

I could tell you the long 2 hour+ version or I could make it short. So here it goes: we were sucker punched.

The building was warm and my reynauds was up to my biceps and my fingertips were bright blue, and the receptionist helped get cloths to cover me with cold water. Then the techs started the nerve conduction test. This was the “test” which would tell them what tests they needed to do, or so we were told. And not only was the Tech there but also a junior neurologist (med school specializations?). It became quickly apparent that they were NOT doing a random test with phrases of “What leg and arm did they find the most in?” ‘Okay, do it there; no, that spike is too much, try over a little left.” Then after doing the tests they were “unhappy” and decided that my results were due to “being cold” (I had told them about the Reynaud’s coming in – Linda was saying, “she’s not cold, she’s HOT!) Anyway they went to warm up gel packs to bring my hand and foot to full heat (even if that isn’t how it is on a day to day basis).

This is when it became quite clear, during an argument, where one claimed that the result was “normal” and “we got what we want” and the other person was, “No, look at the height, that is not normal.” Countered by, “Heat it some more and we’ll try again.” That the techs were there not to do an impartial test but that they HAD my previous test, the one which said I had peripheral neuropathy, and the one where I asked Dr. Atwell-Pope: “So when you said I had a perfectly intact neural system three months ago, would you call this a degeneration?” She had said maybe the machine which took the test was off. Well, it seems that opinion along with ALL of her opinions had been passed on and these two techs were trying, pretty desperately to come up with a “normal” reading (Tech 1: “49, that’s normal.” Tech 2: “No, it should be 60 minimum!” Tech 1: “I’m doing it again.”)

Finally Dr. M. (now please do NOT confuse this Dr. M as the same as Dr. Mezei who was the same Neurologist who had Dr. Atwell-Pope “train under me” Me: “Is that where she started to diagnose “conversion disorder”?” Dr. Mezei: “(YES!) She ALSO did work closely with Dr. Hurwitz of the Neuropsychiatry unit; I believe she’s referred you there too.” – this COULD be a completely different Dr. M who is a neurologist who Dr. Atwell-Pope referred me to at UBC, though she (or rather Atwell-Pope used the same exact diagnostic verbal exam)), came in, looked at the machine reading and told the techs to give it up. She later admitted that I have “moderate to severe peripheral neuropathy.” And is that better or worse than the last time the nerve conduction was done? “Oh you can’t compare labs.” She said. Odd, since it seemed that your techs and the neurologist under your instruction where pretty much holding up the results to their screen and comparing pretty damn hard.

Well, we go through the symptoms starting from which bothers me most; no sweating/heat intolerance and had to describe the whole thing from fainting, arms green, bowel cramps, passing out, spasming of all limbs etc. Just thought I should pass on to Cheryl, Maggie, the Jubilee Hospital and two other EMT crews that….I seem to feel I get heat exhaustion, but this has not yet been proven.

At various parts I would hold up my now purple hand and blue fingertips and say, “Has anyone here heard of Perfusion? Or Oxygen” I did the tests, and had some problems speaking because as I said, putting electricity though me makes me go “funny” (since they did all the tests twice and some three times, just to try and get a better result – a SORT of thorough exam). Then to the heart. I was obviously wrong about it getting rapid heartbeats, even more so when I stand. Why wasn’t I out walking every day again? And why do I use the wheelchair? Then we did the absurd, “Stand on one leg!”, “Stand on the toes”, “Stand on your heels” “and now HOP!”

I need to let you in on a secret, I am actually quite competitive (indeed I tried to explain epee to the techs who were trying to say I had lost 10% of nerve speed sometime EARLIER in life and not noticed; and how in Epee, if I lost 10% of my reaction time when you are going across 6 feet and making binds and hits in a quarter of a second, not only would I know, EVERYONE on the circuit would know it!). And the fact that I had “failed” these tests at Dr. Atwell-Pope’s office bothered me a great deal. So when it came to hops I used my entire body to crouch from the waist and use the vertical force of thrusting the torso upward to launch myself…..well, vertically, knocking out two trays and leaving me SMACK on the floor.

“You can get up now.” Dr. M said without missing a beat (Linda wasn’t loving her at that point).

So this is the conclusion: Dr. M says that the tests show that I have Peripheral Neurological failure of the axons as well as a bit of the mylar. I have autonomic failure BUT sometimes SOME autonomic failure CAN be Peripheral and not Central, and that in my case MAYBE the peripheral neurology MIGHT be caused by an autoimmune disease that no doctor can determine but if they CAN then MAYBE it will be treatable. No offence doctor, but when they say, “When you hear hoofbeats, look for horses not zebras” you seem to have heard, “Listen for a herd of Zebras” Oh yeah, I forget the kicker, she ALSO believes that some of my symptoms are not consistent to her findings and that CONVERSION DISORDER is at play. Conversion disorder means that it is in your head, in her case she thinks it is STRESS (that would be because my original GP diagnosed me with PTSD, and then later diagnosed my FATHER with completely different symptoms with…PTSD and sent him to the SAME neurologist – Dr. Atwell-Pope – what is the chance she might find HE has conversion disorder).

I asked her straight out: “Is it not true that MS was considered conversion disorder, that RA (a type of arthritis) was considered conversion disorder, that CFS/ME was conversion disorder and that FM is sometimes still considered conversion disorder.”

“Yes,” she admitted, “but the neuropsyh unit really left no stone unturned these days.”

Oh, I told her, once they get you in a locked ward, I really believed it. But essentially the history of “conversion disorder” was the presentation of diseases, diseases that CAN be identified today, being classified as a result of being a problem in the person’s mind?”

Yes.”

I let that go. We did some dancing, like, a) Can you treat me? Well, no. But my suggestion of IVIG merited looking into in 6 or 8 months once the tilt table test had PROVEN autonomic failure. I pointed out that Dr. T’s chart proved I had orthostatic hypotension, that in fact six or seven doctors had proven that, the ONLY doctor who still “Wasn’t sure” was Atwell-pope (her prodigy!).

Could she make me sweat again?

No.

Could she stop the Seizures or TIA’s?

No.

I pointed to my feet which were at this point deep purple, “Do you believe that this is autonomic failure?”

Yes.

Can you help the irregular beats and pain of my heart?

No.

But she wanted to “alleviate my quality of life” by concentrating on dealing with the conversion disorder. Linda and I wanted to know….what was there left to treat?

We tried guessing, “Balance? The ability to hop on my heels?”

She said she would instruct Atwell Pope to see me in the Autumn. I said, “that’s after the summer.”

“Yes”

“How am I supposed to live through the summer?”

Dr. M: “Oh, you will live though the summer.”

“What will you bet on that? I’m betting my life, will you bet your medical degree?”

Dr. M: “Um, I’ll bet my word.” (My life against her WORD?)

I continued on, “Dr. Atwell-Pope would not even concede that I had degenerated and indeed PROMISED me (her word) that I had a completely intact Neurological system”

Dr. M: “Well, based on the tests (pricking with a pin, banging with hammer, etc), I would have said you had an intact system as well if I didn’t see the conduction results.”

Again, I asked, “So I know what proof I have for TIA’s, and what for autonomic failure, and what for peripheral neurological failure, but what PROOF is there of the Conversion disorder again?”

Dr. M: “Any neurologist in that room could see it.” Well since you are the only neurologist in the room, and the same one who WOULD have said I had a perfect neural system…..Linda and I wondered how MANY of her patients who get referred with stress end up with “conversion disorder.”

We also realized that Dr. M was discounting the heart, the blood pressure variation, the vascular constriction and the other central nervous system aspects to fit her theory because she said, after she had outlined her “maybe it is just all peripheral and autoimmune theory” and finished with “and thus NOT MSA.” Ah, so Dr. M thinks that this is pretty much my only shot at NOT having MSA? That what, the central nervous system decline doesn’t exist and it is done by the peripheral nervous system.

So I said, “Dr. M, it is going to take two years to try and prove that this is Peripheral instead of Peripheral AND CENTRAL, and then you have to prove it is an autoimmune, and you have to find WHAT autoimmune it is; which after a LOT of testing you don’t seem to know but you believe that is your best bet, to find this obscure autoimmune disease that no one else has figured out on the HOPES that it has a treatment that can reverse this. And after I have done all this, if ANY aspect of that is wrong, then, according to MSA, after leaving your testing I might have a year to live?”

“Well, I’d like to think the other would be true.” Fuck Dr. M, you are playing with my life. And what are you willing to lose….your WORD? Now I understand why CFS patients killed themselves and willed their body for autopsy.

She went through her two scenerios again: The whole peripheral and autoimmune with some conversion OR peripheral and central with some conversion and wanted me to know that she was all ready to put me in that locked ward to deal with the Conversion disorder. I pointed out that the Neuropsych unit did not hold the life support system I needed.

She looked confused.

“Do they like a LOT of highly pressurized oxygen left about on that unit? Do they like a private fridge for ice and cold packs? Do they like oxygen converters? Do they have treatment for an “R” Seizure (the type the hospital said I had between a seizure and a stroke).”

“Uhhhh you would need to take that up with the unit.”

“And what is the success rate on that unit?”

She looked uncomfortable and said, “Dicey.”

Now this is just me but if I have someone who is looking at a) death or b) focusing on conversion disorder to improve quality of life with MAYBE death and they asked me the success rate, I would say, “80% or better” if it WAS 80%. If it was 50% I would say, “Right now 50% but that means your life could dramatically improve in a 50/50 chance!” So what is “Dicey?”

And no offence but when autonomic failure is on the table; when autonomic failure is confirmed by the neurologist (she just HOPES it isn’t BOTH central and peripheral), then who CARES if my balance is not what you hope it could be, or whether I can hop on my toes. My feet are purple, one arm is green and the other is Reynaud’s up to the bicep. We spent several hundred dollars and I will spend several days in recovery to find out:

1) After trying to prove as hard as they could otherwise: my peripheral nervous system is moderately to severally damaged and may be dying (not news to any careworkers, people who know me or visit).

2) I have autonomic failure of at least the peripheral nervous system, the experts at the hospital in Victoria believe that it is the central autonomic failure which will kill me. Dr. M doesn’t know what condition could cause solely a peripheral nervous system to look like Multiple system Atrophy but is convinced one exists.

3) After checking a total of ONE muscle, Dr. M believes that I do not have a wasting of my muscles aka a motor neuron disease. (Linda noted that due to the body tensing stiff as a board – because I have a NEEDLE sticking out of me, they couldn’t actually heard or read the muscle, only the static – so she doesn’t know HOW exactly they made any observations on that ONE muscle, much less a determination regarding Motor-Neuron Diseases.)

4) She thinks I should try an antidepressant (She didn’t recognize the name of the UK one I take).

5) Linda and I believe that anyone referred by Atwell-Pope will come to the same conclusion because a) she learned how to diagnose FROM them and b) she has sent them a letter telling them exactly what to see. So we are going to get a second opinion, even if it means going to the states and paying for it.

6) Dr. Atwell-Pope’s “You’ll live 25-40 years” has turned to “I’m sure you’ll live five years.” To Dr. M.’s, “I have to believe you will live three years” and “I’m betting my WORD you will survive the summer” (not with her help, thanks!). So however you look at it, there is some major hedge betting going on.

7) And we feel like shit, we hate doctors, we hate doctors who torture us and then tell us it is all our fault, or that it isn’t our fault but that they aren’t going to DO anything for months to years, when we may only have months or a year. Linda felt cheated out of her “impartial” second opinion. And we are angry. And you know what happens when I get angry….I get a seizure! No, I mean I get a complaint filed and THEN I get a seizure or TIA.

8) Finally, it isn’t as funny as it would seem when you are asked in all seriousness during a neuro exam “So are your parents related? Like perhaps cousins or …..” (as in, did INCEST and inbreeding do this to you?).

Illness, disability, ability, identity.

Apparently I had a conversation about illness versus disability/impairment with a friend some time ago. Golly I wish I could remember that (becuase it is probably more coherent than this one). Either way I will start again. The social model of disability requires that disability be stable and consistent, or so it seems in order to call something an “impairment.” How can an “impairment” be something that changes from day to day, sometimes from hour to hour, and yet from CFS/ME to MS to the neuro-degenerative diseases, that is exactly the case.

I have to wonder, after my meeting with the sports side of disability how much for some “disability” means, X degrees from able bodied? I don’t know. I had “impairments” most of my life and unless you knew me very, very well you would have no idea that they existed. So I was a person who passed for able bodied; but then since my own grandmother had a stroke which paralyzed half of her body and refused to admit it (She would say, “I just don’t FEEL like moving that arm or leg today”), it is hard to know to what lengths I had been taught to hide impairments.

Of course now, the argument could be very easily made that while earlier I might have shared many aspects and experiences of different people with disabilities ranging from MS, Parkinson’s, and to those who use manual wheelchair for a variety of reasons. Now however, and as time progresses, how can I keep claiming "ordinary disability" when the medical assessment is saying otherwise (And in this case I wish to be 'ordinary'). Ordinary people have remissions, ordinary people can have treatment and medications. I want to be in a big fat cluster of people, something where my doctor can say, “well it seems you have moved from this type to that type and so we will change your treatment” instead of “Yes, you don’t heal on your extremities, that is just part of autonomic failure.” SUCK!

So am I disabled? I certainly am not going to start making an identity around my “abilities” because as I have found out repeatedly, in three minutes, in two minutes of a blood clot or loss of oxygen and “Brain go BOOM!” which would mean I now have half the identity I had before (if I base it around my accessible "abilities").

So why then do I keep doing tests and get told how un-ordinary even in the world of disabilities I am? Well I am going to the tests tomorrow because the doctor, who I WILL get to see is on the board of both extreme neuro degenerative diseases like ALS but also on a board and writes papers on genetic neurological terminal diseases. So, I could, in talking to her, access the people who could tell me what may be coming, and then I can plan how to deal with it. I am an entirely selfish bitch and I could care less about “the next generation” if it means I lose X amount of days while and after they run electricity through parts of me and do the “hmmmm….” And “fascinating….”

And yet, in many ways, the online disability family is the family that I know, the family that I have (along with the able bodied supporters), the people I feel safe with. I don’t need to explain that pain make brain go stupid, because they know. I don’t need to explain that I am sure I could have MANY hobbies if things like dressing, eating, breathing, resting, sleeping, and a few emails didn’t take so much darn TIME. So I don’t want to leave the group which quite honestly, has been so welcoming to me. But then again, they use words I don’t understand: remission, "the bright side", optimism, treatment, “had it X years.” I don’t know what it means to have a pain and mobility related disability for 10 years, and when even my nutty neuro woman doesn’t think that I will, it makes me feel, maybe that I am hiding, or lying, to myself. Maybe I am hiding in this family becuase they do care about me, when honestly, if I cared about them as much as they do about me, I would leave so they could help each other, supporting each other in shared experiences.

My arms and hands changed size twice during the nerve test today. The woman said, “I had heard it, but I never would have believed it if I didn't see it, even when you talked about it at the start.” I have to wonder, when I hear talk like that so many days a week, whether I am still within the boundaries of what it means to be human. Yes, I have a consciousness, but I feel more and more like something akin to “spontaneous human combustion.” A ‘incident’, or anomaly that is found in the Fortean Times (or an urban myth?).

Some doctors, including my GP, do not know how certain aspects of my body are working, or still working, or why they work at all. So am I differently abled? I turn green, every day, and purple, and mottled red. “It’s not easy being green.” Is that a disability? Well it is an indication of a symptom which could lead to death if untreated. But is that a disability. Is cancer a disability? I breathe with assistance. Is THAT a disability? I don’t count it as much of an “ability!” It is part of who I am and I know there are disabilities that require assistance in breathing, but then again, as one PT said, "You kind of need to combine many, many "classic" disabilities to explain your needs."

I know that there are people out there who have it worse off than me; I am still fairly privileged, in terms of care, and access to care and even treatment of chronic pain, in the fortune that has had two people give me wheelchairs and plead for me NOT to give them back. I breathe on a regulator given to me.

So here we are at the end of the cup, mucking about in the coffee grounds and I guess I am saying; do you feel comfortable around me? Because I feel a bit like that I don’t meet the criteria, whoever is setting that these days of ANY model of disability except the “Feel really fucked up a lot of the time” model. I mean, the medical people still won’t admit that I am ILL, it is just that the parts of me needed to keep me operational as a human aren’t working optimally, or at all. How exactly is it that they can say you will die, but that you aren't exactly ILL, is it becaue ill implies treatment? The most common phrase specialist at hospitals say to me, "There is NOTHING we can do for you."

Maybe I am not the only person who feels a bit out of the loop when it comes to fitting in? That is why I am FOR disability rights because I am not getting up those steps and NOT able to open that door so put a damn auto button on it please. But how can I speak up for anyone but me, which seems kind of selfish: “Yo, 30 million Canadians, please spend money and educate yourself in case I come to your town….and for the people who really need it and will still need it when I am just a firework in the sky.”

Dunno, no answers. How is that for presenting my anxiety before a 13-15 hour trip tomorrow which involves a) NEEDLES, many NEEDLES and b) intentionally putting lots of electricity through a person (ME!). Is “Scared” a disability identity?

Elizabeth's present and future, plus a Teddy Bear Picnic!

I’ve lost a couple weeks of health in one day, from a combo of heat wave, a badminton game, collected heat of a top floor in an apartment building…….the things we do not know will combine which do. My oxygen conversion, and ability to reach my extremities is not changing back, it looks that is lost. I am a prisoner to my apartment, and have only enough feeling to feel the pain of what happens to me: the ice vests, the ice packs, and now, knowing that a few hours of what must be bourne will be six hours, or eight, or twelve, for as many days as I can see….yeah.

Linda and I talked today, and from she saw the other night, she told me that when the time comes and my organs start to fail, one after another in a ‘cascade’ she hopes that it only lasts 30 minutes until I die. I have talked to specialists in heart and circulation autonomic failure, specialists in Neurology who have seen hundreds if not thousands of people die or have autonomic failure and there is nothing they can do for me. That’s why we weren’t in the hospital. When my body starts to fail, it fails in multiple systems at once, heart, respiration, conversion, vascular-dilation, inability to heal, blood and liquid transfer, even basic commands like, “You want oxygen, time to breath.” Linda and I can’t remember the last time I have been hungry, that’s how long ago that signal died.

As for Saturday Night/Sunday Morning, no human body should be able to do some of the things my body did, and never at that type of speed. For example, my hands changed size, one growing to 1/3rd larger than the other, then switching, in minutes, then switching again. No one knows how much or how long the microcapillaries can stand having most/all the blood withdrawn out of them and sent to one limb and then sent back to the bursting point again and again, all happening every few minutes. I’m not even sure that without an autonomic system on the fritz to give such bizarre traffic signals, that it is considered “possible” for the human body. Either way, I do not expect it to be very long until more “seeping” blood bruises appear: because the microcapillaries were not made to withstand that. It is a bit like attaching a propeller for a plane to the motor of blender, it is POSSIBLE to make a propeller go, but not for long (do not try this at home!).

Okay, moving on. Since I do not seem to be dead, I am rewarded the rest of the week for being sent to nerve conduction tests. There is one on Wednesday which interests me because it will involve at least 7 hours of loss of function and increasing pain. So, I am having a hard time thinking LONG term; want cheery? Talk to me on Thursday when I only have to go to the dentist (ha ha!). So Linda got me from The Chair, and brought me into the living room where she had created, for me, a Teddy Bear Picnic. We even had the Beatrix Potter china set from the UK so I could give the bears “pretend” sips and feed them cake and then chide one that “no, you already had a piece” to make Linda laugh.

We go on. For me, having all of us happy with each other watching TV on Sunday was more important than immediate health. One I can enjoy, the other just does what it pleases. It turns out that badminton, with shutting all the doors and turning off all ventilation to make sure the birdies or ‘shuttlecocks’ are not affected has turned my enjoyment of the sport to something where I wonder how many heart attacks a summer they get (if it is 26 degrees outside then probably 35 degrees inside)? I guess this is a good time to see how quickly I can start that Judo class.

To let you know, in caregiving, during pain, transfers, or emergency, things are counted different. If there is a difficult thing or transfer then many seconds of “No, don’t grab there.” And “Fuck, I’m not actually elastic!” and some odd cursing on both sides, then once settled, both parties go, “Well, that actually went pretty well!” And it is counted as "good." So, Linda pushing or shouting at me, and me brushing my hair is just how we show in our own ways that we care and it means what it means: that Linda cares, and that I want to have some control, however small in a situation both extremely painful and very much out of my control. And no, I haven’t really talked about that before because I didn’t want anyone to misunderstand. But we (Linda and I) talk about it.

I asked Linda what she is looking forward to, because I realized that now, I had nothing, nothing to look forward to, nothing which to anticipate. That is not a good head space. There is a half marathon in 5 days but I am going to avoid a thumping and NOT enter the race and THEN tell Linda. In fact, I am actually going to admit that probably for a person who wasn’t sure they could do a 10K, a half marathon right now might be a bit optimistic (interpretation: suicidal!). Considering that I don’t know if I will be able to get to The Chair in the study without Linda to help me and she is at work tomorrow, then yeah, not quite ready for 1/2 marathon. Pish! Details!

What we decided was that I wanted to go somewhere that had a subway, or train system. And we talked about how amazing Japan was, and how few “bad” times we really had, and how the fights with hotel managers are fading away in the memory to the wonder of that trip. It was a trip that started with me having a drink with gold in it, in the most famous hotel in Japan and finished drinking at Hotel Keio overlooking Tokyo Tower.

But I can't live in the past. And I don't know how to live in the present. Remember I only promised to TRY and I am trying, trying to find a way forward, trying to find something to jump start me, to get me excited, to make me believe that there is “living” ahead of me, not just “enduring.” And I realize now that one of the hardest things is for someone to care about another person, even a person they have not met but learned about from the internet, is to know that you are utterly and completely helpless to take their pain away. Yeah, it is likely to be rough for a while, maybe for all of us. But that’s doesn’t mean I want you to get in your car with your “smothering pillow” (I did, I think, put my pillow over my face at some point and tried to convince Linda and Cheryl that if they just pushed down really hard, it was a ‘game’ we ALL could play!).

I think in a post a short while ago it was pointed out to me that asking for help is hard. Well, I need help; I don’t want money or flowers; but I do want help getting jump started, I need someone to help me take off again. I’m not sure what that means even. I just know that right now, I don’t have a feeling that I want to live. I want that feeling back of looking forward to seeing the next day, the next adventure. I need to fly.

I need to fly.

Saturday: Laughing lunch turns to Hell Night

Linda: Beyond the unexpected arrival of heat, Saturday had promised to be a fun-filled day. Cheryl arrived mid-morning for a weekend stay and we were meeting up with Dave Hingsburger and his partner Joe at a local Mexican restaurant for lunch. That part worked great, we all had a great time swapping anecdotes about life in the gay and disability worlds. I can’t remember that last time I’ve had such great mealtime conversation. Just goes to show we don’t get out enough with others!

Saturday afternoons we try to play badminton at the YMCA, particularly when Cheryl visits, we lend her one of our extra wheelchairs. You’ve all read about Elizabeth's seizures/TIAs she’s experienced. When it happens at the Y, a hush falls across the gym, people stop their games, the co-ordinator rushes over and asks with anxiety in his face whether he should call for help. I calmly pull out the oxygen and apply the cool packs and say “no, she’ll be fine” while inwardly willing Elizabeth to come around. Fortunately she bounces back quickly. I’m afraid that if it happens while she’s alone they’d ban her from coming back.

Though the gym was so hot that I was soon sweating buckets (there’s an image), I didn’t really put together the heat of the gym with Elizabeth’s heat issues. Cheryl later said it was between 30-40 degrees Celsius. There was no air or breeze in case it should alter the flight of the birdie.

After about 90 minutes Elizabeth had an episode. She had a blank face at one point, and her body and brain looked like someone pushed the pause button. After a bit she sort of snapped out of it, letting us give her water and put on the oxygen and cool pack. She was determined to continue even though she was having vision problems (could only see out of one eye). Here’s where I always face a dilemma: let her stick with her determination and continue her quest despite consequences or take control and pull her out. Either way I’m kind of screwed – if she continues she’s in pain and I have to watch her writhe or hear her say ‘I could have finished the game, why did you make me stop.’ Because I have such a hard time saying no I usually let her continue - often until it is too late.

Yesterday, we tried a few more volleys but she couldn’t see out of the left eye so couldn’t return the birdies. She was also burning up and had difficulty staying upright. Deciding enough was enough Cheryl and I took her home and tried to cool her off. Plunking her in front of the small portable air conditioner, we applied a cool pack and gave her cool water to drink. It was too late – her body had been traumatized and within 30 minutes had decided to rebel. She spent the next 3 hours in the bathroom with horrible cramps. Our bathroom is not much bigger than the tiny Japanese ones we took pictures of. It has no windows and a very loud extractor fan so gets no air flow into it when the door is closed.

When Elizabeth is experiencing these cramps she sounds so tortured – because she is. I can imagine what it must be like for an expectant father while his wife is in the midst of labour. He sees the tremendous pain she’s experiencing, hears her cries and there’s nothing he can do to take the pain away. He can give her some cool water to drink and hold her hand but that’s about it. With Elizabeth there’s also seeking the balance between showing I care, trying to help and also giving her the privacy she needs.

She was overheating. I gave her lots of cold water and an iced frappachino from Starbucks to cool her down from the inside. We took off most of her clothing and I applied a damp towel to her back. She almost hyperventilated. As soon as I heard her gasp I had a flashback to the time she had to pour cold water over me in a Turkish bath after I had passed out. I couldn’t breathe from the shock of it and I could see she was having the same problem.

Earlier this week she got mad at me because I’d apply a cool pack from the freezer to her chest or back of the neck each and every evening. “Do you think it’s fun having ice applied to your body every day?” she asked. “Do you think I enjoy freezing?” “Why is everyone so quick to do it?” “Have you ever had cool packs directly applied to your chest for hours at a time?” “Why don’t you self-apply some for a few hours and come back and tell me how it feels!” (I thought about it, but I didn’t do it).

As I applied the cool packs or towels I felt like such a meanie because I was doing something to her which she hated. I know it was necessary to do, but I still felt bad doing it. That didn’t stop me from zippering her entire torso into the special cold vest I had been storing, with water filled gel in the fridge.

I moved the A/C to the bedroom and cooled the room off. Around 8pm she finally emerged and went for a nap, around 2 hours behind schedule. She had difficulty getting to sleep and was hallucinating.

Things did not get better after the nap. I was so focused on getting us supper before it got even later that I didn’t have time right away to help Elizabeth with her packages she wanted to mail like I had earlier promised I would.

When Elizabeth is hot, particularly when she has been woken from heat her senses were on high alert, and me putting on the oven to start cooking and Cheryl reading, and shifting on the couch were too much: it was like constantly petting a cat the wrong direction. She put on her MP3 player and worked away. When the meal was ready she didn’t want to eat with Cheryl and I because we’d be too noisy. She left the room and went to the hot study and worked some more. When I later went to offer help, she was in too much pain and I had been too busy doing my thing for us to seem to be able to communicate. I gave up and decided to leave her alone, checking periodically.

Around midnight she got dressed and decided to go for a roll. I hate it when she decides to go for rolls late at night and refuses any company. It’s not a rational thing to do. Does she just want the exercise, does she just need the cool air to cool her down, does she just want some peace, or does she want to run away and never come back. Tomorrow is the anniversary of her roll to Moss Rock and I suspected she might going that way. It was obvious that she was in pain, and had been for a long time and I didn’t know how much this was about just getting out, out from where all the pain was.

In our earlier years together I’d block the doorway and not let her out or I’d finally get so pissed at her I’d stomp away and say “Fine, be that way…” I know, so mature. Years have passed and while I still haven’t figured out the best way to handle it, I try not to be too controlling. More often than not, I let her know I’d go out and look for her if she wasn’t back in an hour. Such was the case last night. An hour passed and I told Cheryl I needed to go out and look for her while she waited by the phone (she’d call me if the police called and I could call her if I found her). It sure is nice having someone there to share the fear with.

I only got a few blocks from home when I saw an ambulance at a street corner with lights flashing. Glistening in the headlights I saw some spokes. OMG, I thought, she’s in the ambulance again. I soon saw the spokes belonged to a bicycle not a wheelchair but I parked the van and started heading over to the ambulance to make sure. Did I mention that when Elizabeth not rational that I often become irrational too?

About 20 feet away I see Elizabeth wheeling across the street from the opposite direction and I feel relief that she’s still upright and not in some ambulance or lying on the ground somewhere. She doesn’t want to talk with me or let me walk beside her on the way home. The furthest I can go is about a block. She has her wall of silence where I think it’s too much effort to interact with the world. Of course, I often take it personally and think she’s mad at me. Sometimes I’m right.

Elizabeth: I went for a wheel because I didn’t feel like I was part of our home anymore. It seemed that Linda and Cheryl were clicking together and were fine by themselves. I had things I needed to do and no one was talking to each other, everyone either focused on their task (Linda obsessed on dinner, me on finishing packages to be posted), or just didn’t talk about the tension. I was in so much pain from the heat and felt that I was a big joke to the others, when this was something important to me to do. So I decided to roll and the temp outside was cool, a physical relief. Of course, I did not realize how exhausted I was and I decided to roll to the Cemetery and back (Hey, I had no money, at it was past midnight, how do I run away from home?). I did arrive to find that while there was a full moon, Ross Bay Cemetery has NO lights. Talk about freaky. I wheeled in a ways and took some pictures of the tombs. I tried to use a night long exposure but it was so pitch black they didn’t turn out. Only one, showing the moon coming through the trees.
So I did a couple flash pictures and then wheeled out, scaring a person standing opposite the cemetery smoking at 1:10 am with a startled shudder. What, having someone wearing black wheel out of the darkness of a cemetery at 1:00 am is odd? I guess so. I wheeled in the street on the way back because I was really, really tired and not sure if I could make it back by Linda’s deadline. I thought I still had 10 minutes when she drove past me. Sigh. I realized in the graveyard that while after two days of heat pain and problems, I may not want to live, but I wasn’t ready to die. Well, that was at 1:30.

Linda: I drove back and walked beside her because some guy was following her, because she was clearly in distress. But try convincing Elizabeth of that. It is all shaken heads, pushed out bottom lips and determined to push herself, even if she can’t sit up and her torso is lying on her legs, using one eye to stare at the cement to navigate. She finally made it back home around 1:40 am only to have a repeat of the cramps. Back to the bathroom for another hour.

She’s still not talking and from the bathroom, heat and cramps all she can hear is Cheryl and I talking to each other in the living room to keep ourselves awake (even though Elizabeth repeatedly told us to go to bed…like we were going to do that! Good thing there is only ONE stubborn person in this relationship right?). There’s no way we’re going to bed while she’s still up. She’s feeling alone, and upset, and unwell. At times like this it is just a race between her strength and the bowels, plus she was peeing about twice what she had drunk. She said, the last she remembered was 2:42. I check on her periodically and came to check on her at 3:00. She was passed out on the bathroom floor, naked.

“Don’t panic.” I tell myself. I put the cooling vest on her and she immediately goes into shock: her whole body shaking uncontrollably even though she drifted in and out of semi-consciousness. Cheryl helped me roll her onto a bath sheet and I’m able to drag her on the towel into the bedroom and out of the bathroom which was suffocatingly hot. On with the oxygen as her fingers had turned purple. Cheryl pulled out her stethoscope and checked the heartrate which was beating so fast she couldn’t get a reading. Cheryl said she had passed Heat Exhaustion and gone into Heat Stroke. Her body was still in shock and was shaking. I don’t know how much time passed as I was too concerned to look at the time but eventually Elizabeth started coming round. When she could finally move an arm, or hand she finger-spelled that she was in ‘shock’ and her lower body was in ‘spasms’. Cheryl still could barely discern between the heartbeats, it was beating so fast and her blood pressure was 168/148. She finger-spelled that she had been bleeding out of her nose. Then she started groping for something. Finally we understand that….she wants to brush her teeth?

“Elizabeth just SIT STILL!” I wanted to scream at her (maybe I did?), because she couldn’t seem to understand the condition she was in, and that the last thing she needed was to return to the sauna of the bathroom. Plus, I had dragged her bodily OUT of there, how was she going to get there? She seemed to think she could crawl there. I just wanted to put her to bed, forget the teeth. She fought getting on the bed, and using my body tried to walk to the bathroom so I shoved her onto the bed, leaving her sprawled and shouted, “Can’t you just wait!”

We finally got her on the walker and into the bathroom to brush her teeth and what happens? She sees herself in the mirror and tries to start brushing her hair. I was NOT amused, vanity can go too far sometimes. Cheryl and I got her from there into bed.

Once she got into bed more pain started, extreme pain. She said her bones were hurting – a comment she’s made the last few nights. Her spine and back are causing the most pain. I give her pain pills, muscle relaxants and valium. I have another fear – is this the new reality she’s going to face every night from now on? I don’t voice my concerns in hopes she hasn’t thought of that. But that’s another subject for another day.

Well, except that now she WAS talking she just kept saying the same thing, “Kill me……kill me…….kill me.” Then as the pain grew, she went into a spasm which Cheryl called, “Elizabeth turning herself inside out” or “Elizabeth turning into a crab.” She was in spasm several inches off the mattress, her back arched from her head to her pelvis with hands curled as she kept screaming, “CUT THE SPINE! CUT THE SPINE!” Even touching her spine caused a scream and then, between “Cut the spine” she would indicate we should go to sleep! That did not seem an option right then. Finally between holding her and the pain meds, she settled down around 4:00 am, still thinking it was 2:40 ish, the last time she looked at her watch.

I’m happy to report today was a better day for Elizabeth. The temperature cooled several degrees, we talked about our feeling of yesterday and why we did what we did. Seeing thing from each others view and NOT being in pain helped a lot. So we were all friends again and Cheryl and I chilled out with Elizabeth talking and watching Rebus (season 4 from BBC) till Cheryl left. Here’s hoping Monday will be a good day, too (and cool weather!).

I didn’t expect my first “weekend blogging” to be quite so….eventful. But this was the worst episode of heat exhaustion I have ever seen Elizabeth have, and this is only May. Cheryl had a great line for the “kill me” which was something like, “We’ll discuss that another time.” It was a terrible night for Elizabeth, and I fear foreshadows a long and difficult summer ahead.

Take Two: The rest of the story

Linda here…

Those of you who had the chance to read the blog last night have noticed it has now disappeared. That’s because I needed to delete it.

I originally wanted to take over writing Elizabeth’s blog on weekends in order to give Elizabeth some R&R time as blogs take hours for her to write. The problem was that I was so focused on my good intention that I continued to focus on that idea to the point of ignoring the essence of what Elizabeth’s blog is about – What is going on with Elizabeth.

I wanted Elizabeth to have a nice relaxing Saturday. Trouble was, we were having a heatwave in Victoria yesterday, with temperatures reaching nearly 30 degrees Celsius. By the afternoon Elizabeth had heat exhaustion which turned into full heat stroke before the evening was over, and Elizabeth was in agonizing pain for 10-12 hours. So much for relaxing.

If there had been no blog, people would have had a more realistic idea of what was going on (Bad day for Elizabeth). And when instead of writing about what happened to Elizabeth, I wrote an introductory ‘fluff’ piece, that wasn’t a representation of where Elizabeth OR I was because it was easy to assume that we were having relaxation and fun instead of ice vests and passing out and hands turning purple and blue. So I never gave you the chance to help or express to Elizabeth your feelings of what she was experiencing. And when Elizabeth found out after she was rational, after what she had experienced and then read what I posted she was kinda pissed off (in no uncertain terms).

I’m getting (from Elizabeth) and giving myself a second chance so I will come back later to tell you what her day really was like and my emotions about it: helplessness at Elizabeth’s abdominal pain, feeling like a villain (seeing Elizabeth shiver and protest) for putting cold clothes/packs on her to cool her off, worry about her withdrawal and panic at finding her passed out on the bathroom floor.

In the meantime, I just wanted to set the record straight.

Talk again later,

Linda

P.S. Thanks for all the comments – sorry but they were deleted when the blog was deleted.

Thoughts about "praying for me" and "hoping for a miracle"

When I first became ill I talked and wrote about it with my Christian friends. And I watched as the two Christian forums I participated on quickly responded in a singular way, “I’ll pray for you” while at the SAME TIME, talking, emailing and communicating with me less.

Yes, Christianity doesn’t know how to deal with disability. And they didn't know what to say so they said nothing at all. Do you know what that sounds like someone going to tests every day: silence. In not more than a few months I was mostly housebound (without Linda’s assistance), and yet had no one to email or PM, had no Christian church which I could reach or would accommodate me. Yet, all of them would “pray for me.” as a response when I approached (after a few times of that, you realize it is the ultimate conversation defense, they don't need to know anything about you, aren't even asking but they "care" so please GO AWAY!)

I AM a Christian so I have nothing against prayer, it is just I never expected “I’ll pray for you” to be synonymous with, “I am about to sever all communication with you.” And indeed since then I have noticed that for some people, people with ample availability to do more “pray for you” actually came with a pride in their apparent helplessness ("sorry, dedicated to the XXXXX Ministry, I leave this in our loving Father's hands").

For those who don’t know the story of Jesus after “the last supper” Jesus went up to a garden taking with him three of his closest friends. Why? Because he knew he was to be in pain, and soon die and was scared. He went up and prayed, crying and so depressed that he wished to die and when done returned to find his friends….asleep. With a certain anger and desperation he said, “Can’t you even stay awake with me for one hour?” Now THAT, was Jesus’ prayer to his friends. A prayer saying “be with me, comfort me.”

I went on one Christian board and said, in plain terms that I was in pain. That I was scared and right then what I did NOT need was a lot of people saying “I’ll pray for you.” I BEGGED for support, anything from human contact, to emails; some sign that I was not alone, that my fear and pain were not to be carried alone.

The response was over thirty people writing “I’ll pray for you” or posing a “praying icon” or posting some creepy “My Father has his hands on you” message. For able bodied Christian music singing group, I couldn't get enough company. For my body ripping itself apart? Alone.

Then I got the terminal diagnosis. And the word “miracle” came up. I’ll pray for you, I’ll pray for a “miracle.”

And you know, if you are a person who is housebound and have a chronic condition and all you can do is email me to say you are thinking of me and that you are praying for me; that’s is GREAT. If you come to this blog, which is for people to read and you choose to post that you are worried for me or love me or pray for me, that is ACTION. That is not stepping AWAY from me while washing your hands because you “prayed.” That is not openly ACKNOWLEDGING that I am in pain, afraid and going to die while you are going to sit back and watch, watch for a “miracle.” Even God herself got SICK of people acting this way and talked repeatedly about it, in Isaiah, in Hosea 6:6; No more empty sacrifices, God pleads, but ‘mercy’, love for each other (or in God shorthand, "What the FUCK is wrong with you people, you treat each other horridly and then come to me expecting me to fix it and try to bribe your way into my love.....you SICK FUCKS!").

Even Jesus repeated (from Isaiah), that people “come near me with their mouth….but their hearts are far from me.” So when God says that God is tired of empty prayers, what do I feel about those whose hearts, bodies, attention, compassion and memory are FAR from me. Again, repeating, if you commented that you are praying for me, I am not attacking you. I am thankful. But beyond that, perhaps I am the thorn in your mind because quite honestly, those who are least able to reciprocate are often those who NEED it the most, from a card, to an email, to a phone call. Is there really no one you know that needs to hear that they still matter, that someone out there is thinking of them?

I was going to tell you a story or two about my virtue in visiting those who others forgot. Blah blah. But I want to tell you a BIGGER story, I want to explain to you about a miracle. See, that’s the great opt out these days, to wait for God to deliver the “miracle.” And yet, if you read the accounts of miracles, they were mundane. Jesus’ first was because a wedding ran out of wine. Then there was Jesus needed to get to where his friends were (so he walked on water to get a boat - then made someone else walk on water because.....they wanted to); there was giving lunch to someone who was hungry. Yup, that’s it, someone was hungry and Jesus fed them (and a few friends). But that was a miracle.

So when a person, before heading out for their night on the town and prepping for their weekend in NY to see the shows posts on some Christian board that “gosh, too bad, I’ll be praying for a miracle.” I think of a woman with Chronic Fatigue Syndrome who when I felt most alone, felt most abandoned SENT me a miracle: a package which was a cornucopia of little things from buttons to CD’s which said, “You MATTER.” THAT was a miracle. I have had many miracles this year, most from people I never met, from cards to gift baskets telling me that I was NOT alone. When I needed a phone because my hands were having problems pushing the buttons, one arrived: THAT was a miracle (I bet you thought I forgot – the “I” right now might have but I wrote it down, so that I would always remember). And I have tried to pass it on. A miracle is a card arriving in a sucky week; it is someone listening and hearing and acting. That is a miracle. When someone says, "you need me, just call", THAT is a miracle. These are “miracles” coming from people who have chronic conditions and/or families, who have their own issues they struggle with. These aren't from people sitting around, no these are people struggling too. Which is why I am OBLIGATED to act, to pass on what I have learned...from them.

Jesus told his followers that when he comes back he will say, “Thank you for that drink when I was thirsty,” “Thank you for the food when I was hungry.” And people will say, “When did we do that?” And he replied, "Every time you do it for the LEAST in society.” I think a lot of us realize that we have slipped, in our Health and Wealth Western Worship into that status.

So this is a message for the several dozen/hundred Christians who wrote me off, to all my ex-friends and relatives in blood only who are in a hurry on their way to church (or a coffee house, which seems a North American equivilent). I am the closest you may ever meet on earth of Jesus the Christ, the person you follow. No, not because I am wise, or immortal but because I have asked, like Jesus, “Can you not BE with me for a time” while I was scared, and while in or facing pain. And if you are waiting for God to do something, passing the buck with a “we’re praying and hoping for a miracle” I will tell you. Miracles happen to me all the time, but YOU are not part of them, prayers are answered all the time, but YOU are not part of them. In fact, it seems you are part of nothing.

This week a woman snuck my racing chair at her facility to fix what BC wheelchair racing Ass. had left unworkable and fucked. She did it on the sly and her and her techs were happy to get me so I could wheel the chair up the driveway and arrive back with a smile. While I off testing and wheeling with gusto if not accuracy, she said to Linda that she wanted to help me do what I so clearly wanted, “to LIVE until I die.”

She offered. She answered a prayer, she and her team performed a miracle. I know, I remember. She went home having made a difference in someone’s life…mine. The person who offered an empty “Yeah, heard you were sick or something…..pray for ya!” – they just wasted half a breath and 10 seconds of their life. I guess the question is who you want to emulate. I know who I am trying to emulate, who I am trying to repay, who I am trying to “be there” for as much as I can. Sure, I fall, I fail, but I hope that before MY end, I can “be with” a few people for an hour, for their hour of need or fear or being alone.

On nights of extreme pain or when I wonder if I will make it through the night, I say to Linda, “Pray for me.” And she holds my hand. I am sure she prays too, I don’t ask. I just know that she doesn’t grunt a “yup” and roll over. She holds my hand.

Miracles happen everyday....when you are able....be part of one.

Goth girl tries something "quiet" and "peaceful" to aid recovery (think bones!)

The question is, what to do with an brain addled goth who is denied being hit repeatedly on the head (boxing)? Linda said that we were going to “Ross Bay Cemetery and Pub.” And did I know where that was?

I did not. Though the idea of a pub in a cemetery sounded pretty nice. No, it seems the cemetery was on one side of the road the pub on the other; so dead people AND booze (woo hoo!).

Linda brought me in the van and I wheeled across the road and she asked, “Does this look familiar to you?”

No. But my thought was, “Does that matter!” I mean, do I look happy here or not.

This is like catnip for a goth.

Before she could stop me I was doing movie star vamp poses on mausoleums. “Take the picture!” I begged and then explained that often in cemeteries there was a fine line between respect for the dead and ‘camp’ which I frequently crossed.

Is this what people meant when they said I should do something “easy” and “restful?” Because I guess going to a cemetery IS restful…unless you go with me. That is because I am wheeling all over the place doing poses from the Japanese photo machines but in front of graves. Some bikers stopped to watch. Here I am doing the “tragic imitation” of the marble angel which Linda called the “disability angel” because she had a slight amputation issue (missing a hand). I am sure if I was 16 I would be having DEEP and MEANINGFUL thoughts at this point while I contemplated life and how HORRID it might be that I would turn into my mother.

However since I was not 16, which means that while I have finally realized that there are WORSE things in life than ones parents and getting grounded and how they just have NO TASTE (like I do, black with black - what goes better together!). See, I could contemplate the somber aspects of facing my own mortality, only in such a NICE graveyard it just bounced off me like a spitball. Woo Hoo! Look at this marble grave! Let’s go over there and take pictures!

Meanwhile Linda is almost trying to RUIN the mood by….smelling the flowers. Sheesh! We don’t go Victorian Period cemeteries in Victoria to smell Lilac, we go to see our friends, or what is left of them.

Of course, no cemetery would be complete without the crow to perch above the graves. So we had ours. Actually we had to entice him from the newer graves, one of which was slightly sunken (bodies do that), and he was using the grave-cover as a bird bath.

I asked Linda for a picture and the bird started coming toward me so we took a picture of me and the crow (sorry, couldn’t find a raven, though you might spot a squirrel in some pictures).
At this point I decided to see if I could use my powers of animal persuasion to get the crow to come toward me. This was actually quite easy to do, however it would not perch on my arm just sort of stay a few wheelchair lengths away. So I started talking to it, trying to get it to do my “bidding.” After a few “GO! And peck the eyeballs of the enemies to disability rights!” I realized that I might have the POWER to bring animals to me, but after that things sort of fell apart. Too bad.
After that I just started doing strange poses, pretty much whatever came into my head, which was pretty fun except two seniors on scooters stopped to watch me until they decided I was on some sort of mind altering drugs (well mind altered - yes, drugs no!). Here I am happy and exhausted.

But come on, this was one FREAKING beautiful cemetery, even if you aren’t into marble and headstones and all that you have to admit the late spring sun on the leaves made it look almost like fall instead of the first rises of spring? “Loverly!”
I stopped at this 1883 headstone to give Linda some ideas of poses for me when she lays me down (this is where it kind of veers into 'camp'). Well, they would if we hadn’t already sold my body for science (no, that was in the UK, I think I am just being cremated and shot up as a firework). I did my, “Poor crip girl, finally at rest…” pose and she did her, “Are we going to get the beer now?”

Linda wins for now (and beer). I will return with my legions of crow friends to bring crow droppings to the cars of those oppose disability rights. Let us just say that next to squirrels, dead people and marble statues don’t ask a LOT of questions, are easy on the brain and are pretty fun (even if the faces of people passing by say that they aren’t supposed to be!). Sorry! That’s why I like the Victorian Period headstones and crypts; no chance of pissing off a relative coming to visit. Anyway, I hope you enjoyed my visit and the required gothy photos. If you come and see me I can take you to this wonderland, which I still don’t “remember” but hey, with a cemetery like this, I don’t mind rediscovering it all over again.

Happy crows and cool marble!

Today I am "faking" badly, Linda says it is "very bad" day.

Linda says that I am having a bad day, or “a very bad” day; my brain is not well, and I am not well. I have two heart beats, like two hearts. One is bum-bum-bum-bum-bum (fast) and then after about eight times it goes SLOW: budump-budump-budump-budump-bum-bum-bum-bum-bum-bum-bum-budump-budump… My heart monitor does not like it. Also I get dizzy.

When I cannot remember “Faking” is when you talk to someone in the hopes that you will pick up cues and/or remember who they are. I was not faking very well today. Some more memory is gone, at least for today; many words gone too. I watched a video of me playing badminton. I put it on the blog yesterday but I do not remember playing those games. But I must have remembered yesterday.

Today I went to watch a movie and I knew the ending, I knew I had watched it and yet, I could not remember anything until it happened, at which point I could remember that I had seen what just happened before. Linda says for most people this sometimes happens. It was not something that happens to me. I do not know how to cope with that, reminded every minute that you can’t remember. So I turned it off.

Then we went to see Janet who had fixed a racing wheelchair for me. I can remember a picture (I put on the blog) of me in the chair wheeling with a blue cart in the bushes in the background, but remembering that is not remembering DOING it. And I can’t remember wheeling it. But now I have the racing chair. Linda says there is a “story” to the chair, how it works now and before it did not.

When we came out, I went to where the van was, at the end of the row. Only Linda was standing holding open the door of a black van at the front of the row. We have a black van, but I KNEW, I REMEMBERED it was behind another van at the end of the row. Indeed, even staring at her with an open door of the black van which logic tried to say should mean it is OUR van was not as strong as what I REMEMBERED. My MEMORY was that the van was not there, it was at the end of the row. So I had to go to the end of the row and come back. It is things like this which make this a “Bad day”

Linda says that our van WAS at the end of the row last time, on Monday, behind another van. But I do not remember that. I do not actually know what “Monday” means. Except that I remember that there are seven days and one is called Monday. But to remember what happened today and then remember what happened yesterday and the day before. This is not what I know. Linda says today is Wednesday. She says that Monday comes two days before Wednesday but I have no memory or memories that links the days between today and Monday, so it could be a week or a year from the Monday of the van memory to now. I remember going to the track, I remember going to the hospital, I remember doing a video of pictures, I remember going today to see Janet. I remember the movie and seeing Janet. But the other memories I do not know how those go and link up.

I went tonight and played a little badminton, after I slept a long time. Linda was working at home on the computer hooked up to the government. She did not like that I went. She says I “push myself” and while many people will not let me fall, because they only see me as doing things that are good and not the other times. She also says that I do not know how to stop: I do not know how to fall, only to break.

I lost some games tonight at badminton, two games 14-14 lost 2-3 in the tiebreak. I also sprained/pulled/bruised part of my left foot as it is dark purple. This was probably when I pushed myself out of the chair at 14-14 and missed the drop shot the other team made. When I hit the floor, my racket went flying. I wish I had made the shot. But now my foot is funny. The two times tonight I fell over and the chair fell too, I made the shot. I think I should learn how to move the chair instead of falling over.

Linda put up a Hello Kitty hanging by my bed because I don’t remember buying it. That way I can enjoy it again and again. I like it.
I can write the word “scok” but not say it. Except the computer says that is not the right way to type it, but that is what I say. They are things you put on your feet. And I called Jeff at badminton, “Ffej”. He thought that was funny.

Linda says that maybe tomorrow will be better.

I’m sorry but today this is what I know.

Beth and badminton: pain, sanity, insanity, naked joy and a video

It has been days of stone: hard. The nights are worse. After three hours of cramps so bad that I scream over and over, I get carried to bed after 3:00 am, with a previous TIA making the corner of my mouth turn down, I know I will lucky to sleep three or four hours before I have to be packed with ice from overheating. And that is not half of it, not a fraction of it. So I spend much of my day working, fighting or working to keep my long term health up, at the cost of my immediate health and sanity. Because, when you have a full heat exhaustion meltdown twice in 38 hours; and when you sleep five hours one night, then four, then just hallucinate, it is hard to know what sanity is.

I guess sanity is going forward. I get from my bed to my wheelchair because I need more painkillers. So maybe sanity is wheeling over and turning on the computer. Or maybe that’s insanity.

I went to badminton last night; I was late because a home care worker was supposed to help me dress. But she didn’t feel like it, so she didn’t, the same way she didn’t do the dishes or make my bed as I asked. I did not feel like badminton, but then, often we do what we know what will be good for us, not what we want to do.

I hate going up that hill; I hate wheeling into the Y knowing in six hours I will be in so much pain I will but unable to keep my upper body still for more than a second or two. But I do it.

Linda wasn’t there, she had to finish writing a course that was to be taught the next morning in Vancouver. She would come to watch me later. My volunteer is away for two months. So I went up alone and put my badminton racket in the rack and got out on the floor.
Because I am physically and emotionally burnt, and I knew that if I could just focus on playing, just get the endorphins going then I would be able to smile, something I hadn’t done that day. I would be able to laugh. And so, I calculatedly forced myself up the hill and into the court so that I might let myself go, and pay the price later (which was a TIA). Because these courts are where people know my name. Where people applaud when I rock my chair vertically to get an extra two inches for a slam.This is where I can be tired, where I can despair and yet cheer myself on: “Come on Beth, focus, we’ve got to get some flow here, got to get this serve!”

And when those moments come together and you smile, and laugh that is when I remember that this is what I AM fighting for. And what to the rest of the people is a hobby, is to me a reminder of so much of the life I left behind, where the frisson of play, people and purpose come together. And because so much of my body has taken choice away that I have to choose, knowing the risk, hoping that this time it won’t happen, but knowing that it probably will, all for an hour or two of wild abandon.

Badminton is where I am naked. Naked emotion, naked desire, and the one place I can be fearless because crashing to the floor or getting a birdie slam into my face (as I did last night) is nothing, absolutely nothing compared to the pain of taking a breath later.

I can’t tell if I’m crazy. But, if I can force myself, I’ll probably be there on Wednesday too. Here is a video I made, some pictures, some video Linda took of what Badminton means to me. Yes, it is the hits and points but it is the partner laughing as you pound in frustration at a missed hit or the jubilation of victory. It is how I am seen, and part of the best three hours of my week (that's how much time a week on average I genuinely feel good). I hope you enjoy it, because I did. Yes I paid, but I had joy.

Blogging for CFS/ME: Honor those to whom honor is due

Today is blogging for Chronic Fatigue Syndrome/ME Awareness Day.

The one thing I knew going into the Neurologists office was that I more scared of getting diagnosed with CFS/ME than with a neurological condition which had a chance of killing me in 5-7 year. Lupus? Sign me up! Anything but Chronic Fatigue Syndrom/ME. Why was I so afraid? It wasn’t because I was ignorant of CFS/ME but rather I knew both of it and what society thought about those who had it.

Certainly, I know, like many with chronic/neuro conditions about Fatigue, but CFS is more than that, and the stigma attached to this condition, a disease, a disability few will try to understand is horrific. In watching a special program on CFS/ME I learned it was nothing new, having had outbreaks since the 50’s (the people were put in “sanitariums” aka mental asylums), and the famous outbreak in the 70’s which the CDC refused to investigate. Leaving a doctor out there still storing over 1,000 samples, waiting until the day the CDC decides it cares. He told tales of people who killed themselves willing their body to the center of disease control for an autopsy. They were willing to die “if only this can be proved to be a real disease.” The CDC cremated the bodies as no autopsies are held for suicides from people with mental illnesses.

So yes, a disease in which some will recover a portion of their abilities after years and no one knows why; a disease which puts you into a silent empty space where “The world” continues on, but you do not. Each day is lived, survived and your progress against personal goals in measured in inches while the one word on the lips of someone, whether relative, doctor, PT or what used to be a friend is “lazy”, “Just doesn’t want to try.”

Laura Hilldenbrand who wrote the best-selling book Seabiscuit (made into a film), does not do signings, or appear at bookstores because she has CFS/ME. In fact, it was the fact the someone could do something “successful” and yet openly admit that they have a condition which debilitates them in the way CFS does which brought North America slightly away from names like “yuppie flu”. We live in the west were what you “Do” defines you, so how to classify a woman who was bedridden for six years, then worked on the book for four more? Is she a success, lazy, or unbelievable determined in reclaiming herself against a misunderstood condition? Finishing the book caused a severe relapse and in a quote from Laura which most CFS/ME people can identify with “You want so much to defy this illness and live on your own terms. I hoped I could get away with it, but I couldn’t.”

You live, but not like others. Yet people have CFS/ME and do work, as they can, take care of children, as they can, focus themselves on the victories of progress measured against the realities of their condition and the goals they set themselves. Because who else will understand what it takes for someone with CFS/ME to finish a year of school or uni; to continue, as they can, on an ongoing art, photography, writing project. Respect those who live with CFS, as they have to listen to not only the voices from society but the voices within themselves, that they “should” do more, or “I heard this works” all the while trying to staying on track in completing something that is important to them. Something that might take an able bodied person a day or two.

I remember the first major hill I did in my manual wheelchair, a chair I had been told I was “too weak” to use, and would be “too painful” to operate. I did it on oxygen and I did it four inches at a time. And when I got to the top, I knew that the people walking by, talking on their lunch breaks did not care or notice that as an accomplishment. Yet for me, I had accomplished in my will and heart as much in the time it took me to make it to the top, and not give up, as when I was able bodied and ran the LA marathon.

People with CFS/ME go on, and I cannot articulate their life but I can ask that people remember and honor the accomplishments which occur behind curtains and closed doors. That often iron will and an ability to accept the bad, the pain, the vertigo, the fatigue and yet STILL look ahead to completing the hearts desire is one which should be acknowledged.

No, someone with CFS/ME is not going to be getting headlines for doing seven marathons in seven days or wheeling across some country. In fact, they are likely not to be getting headlines at all as their illness cocoons their life away from public view. But thanks to the internet and people like RachelCreative, we can see and hopefully understand more about the day to day, hour to hour life of CFS/ME (click the link to read other bloggers on CFS/ME).

As a follow-up, I did, at two later meetings, ask the Neuro if maybe she was wrong and I DID have CFS. Or to put it bluntly, I decided I would rather openly acknowledge my prejudice and fear of what people would think of me and live, than have a “cool” or socially acceptable condition and not. And that’s what people forget, people with CFS/ME do live, do have good times, do laugh, do spend the same minutes of a day as everyone else, just not in the same way. It is just many of us don’t hold on so long, or have to mentally fight so hard, for that oasis of energy.

disappointment with wheelchair racing but I learn to be me.

Today sucked, but I learned something. Linda and I got up and because it was sunny (windy and cold…but sunny), we were going to the Goose Trail to practice on the racing chair. Only first we stopped at a bike shop as they were having a sale; plus if I was to use the chair I needed to buy a camel pack. This is a pack which stores drinks you sip in a straw, as that is how I can use the Gatorade to regulate my heart and re-hydrate in training and racing. The bike store looked at my racing wheelchair and said the left wheel was bent and needed re-tuning. Linda and I started thinking about the agreement we signed that we would return the chair “in the same (perfect) condition as we received it.”

We went to the Goose Trail anyway and found out that the gloves which are like mitts, were missing the Velcro to keep the hand tucked in with the hard leather. The velcro had been cut off, also the left thumb was virtually detached. But I was trying to keep a “good spirit” and went out to use the chair anyway, even if I didn’t have the hand strength to keep my hand closed in the “punch” position. I had been up late the night before looking at the races in the area and I wanted to set a high goal of maybe eight races. There was one in two weeks and if I could convince them to include wheelchairs then I could participate (this is what wheelchair racing series told me on the phone last week).

Well, the chair made a grinding noise as the left wheel ground into the frame, Linda could hear it many feet away on her bike and said, “Sheesh.” I tried to compensate by leaning over and away from it. There is a little V bar below the rail to the front tire and it was pushed all the way in to do turns to the right but the chair kept pulling left so hard I spent half the time making adjustment with the large turning bar. Even on a flat straight line there was no way to keep it straight. It was very disappointing but I still did I think about 1.5 km. And worked on doing uphills as well. It was just one of those things where what you hoped is not what has happened, and no matter how you try to put a happy face on it, it was getting more difficult to do. How could they not know about the chair and the gloves? I mean, for N., who raced on Saturday, did they send him to the races with a similar racing chair?

Even Linda felt that she wanted to send it back; she was frustrated with the chair but more frustrated with the association which states as the motto, “The WC Race Series has created an environment that is based on peer support and welcomes all levels of racers from the beginner to the seasoned veteran.” She was frustrated because “They” the racing association, said I have to be part of them to participate in races, and I can only do that using a particular type of chair. But then the chair and equipment they provided at a cost did not work, and on a follow up call today, they didn’t particularly care about that. And that made Linda mad at them for making things more difficult for me, and turning what should have been a good thing into a bad thing. And it irked her sense of professionalism; for an organization that “actively recruits” they don’t nurture the people who want to learn the sport. Several times she asked, “Do these people even LIKE wheelchair racing?” (And you know my motto: You make Linda cry....you die)

I called James the coach and he said that he was driving the group to the ferry. This was a surprise as we had directly asked J. the Wheelchair Race Series coordinator on Saturday if they were going to be there today so we could come back to talk to the them and were told no. This news produced a few “Oohhhh, and I heard you ask them!” from Linda. James wanted to know when I was going to come to Vancouver, as the office is right beside G. Strong, the rehab center for spinal cord injuries. Also, every Thursday night there are “Training” nights but again, only in Vancouver. So with them recruiting from Strong, and going there every week and training in Vancouver, which is a 5 hour trip each way for me, it seemed like a little club, a Vancouver club for people from G. Strong. We wondered if T., who had gone to the Paralympic games had been in Vancouver because I couldn’t see how she could train here without a coach. It turns out she moved to Australia for training. Anyway, James said I should train at the track until I was used to the chair and use duct tape on the gloves.

Since I do most of my training when Linda is at work and the track is five miles away, I sent an email to ask him how one gets there, since the chair is too long to make the corner on the bus. Also, I asked how he managed using his teeth to get strips of duct tape long enough and applied when on his own and his hands are in the gloves. Since this is what I need to do and I could really use some advice in that matter. When he told me that I was to go to a hardware store and get spacers and then take the chair apart and fix the left wheel it felt like fencing all over again. The whole, “Oh, you can’t redo the electrical wiring of your epee blade, I guess you aren’t a real fencer!” I am not particular sorry that I don’t have a dick. Meaning, I joined a SPORT, not a SPORT and HANDYWORK club. Or why is it that when you want to do a sport, the guys get all, “Oh, well if you can’t break down a bicycle from scratch and rebuild it then you probably shouldn’t ride.” Sorry, I mean some guys, and in some sports and this seems one of them. Dicks!

And to put it bluntly, I dealt with Wheelchair Sports (who I called last fall with no call back by the way), because I was told I had to. I want to keep active and do stuff. When I do badminton, they DO provide rackets to beginners and they don’t expect them to go home and restring them or give them ones that cannot be used. If I wanted to learn how to repair wheelchairs, I wouldn’t pay to have them serviced, and to expect someone with limited hand function to, what, do all the breakdown and rebuilding of something they have never seen. Yeah, this sport really welcomes beginners. Plus, I pointed out to James that my next race was in two weeks and I didn’t think the racing chair would be ready by then. He agreed that I should do the race in my day chair. Which sounds a lot like how I did the races before, and didn’t require a rental fee, a membership fee, an insurance fee, several phone calls, emails and hours and hours of waiting. Also, I find the idea of training on a track, going around and around in one direction as training for a 10K on a ROAD race to be strange. So I am going to train on the Goose.

Anyway, in the afternoon I had a very strong attack and could see blue out of one eye and my hands turned blue, my heart barely beat and Linda debated if I had to go back to the hospital. So….five hours later (once I was conscious again) I made a decision. A) Both major attacks (Linda wondered if this was another seizure) occurred after a lot of stress and I am going to keep that at a minimum for things which are non-essential. B) We took the wheel in and had it re-bent and trued and paid for it and tomorrow we are going to the techs to see if they can make this chair usable, and if they can’t….well, the cost of 7 trips to Vancouver for “training” could buy me a brand new racing chair. Or I could just keep doing what I am doing, racing to keep fit in the chair that I have.

I also decided that barring someone actually going out of their way to include me, I have no real interest in joining wheelchair sports. Because I like sports, and I like playing with people who aren’t bigots. And so far, I have yet to find much in the way the organization for BC SCI’s has treated me that isn’t a lot like bigotry. At the track meet they were talking about some of the people had their chair bought for them by the Rick Hansen foundation (available only to SCI’s) or the Power to Be program (available only to SCI’s) and as the Director of Wheelchair Race series said to me, “demyelination of the spine is NOT a spinal injury” (Good news for all those people with MS in wheelchairs then I guess). Well, I fell for it for a weekend and tried to be what I am not; I have a spinal cord injury, even if not recognized by SCI organization, as well as a greater failure of the autonomic function than most or any SCI’s. I am a degenerating neuro and Janet told me that if the SCI people found that out they likely would refuse to give me a classification “until I stabilized” (which for a degenerating neuro is when you get put six feet under). Nice. Well, if I can live with being me as a wheelchair racer, I guess they will learn to live with us lower ranked people with disabilities. Or as a true story told me yesterday, “A quad told someone with CP, ‘I’m so glad you are here, so now I have someone to pick on’” (Since the para’s pick on the quads, and on down.)

Cheery eh. But still, be who I am. And let go have fun and play badminton and do a bit of wheeling when it is fun because until that peer support comes, I see no reason to change my intention of taking judo and hanging and playing sports with people who interest me, which, with the exception of T. and her friend, seem to be those NOT in sports where only wheelchairs are welcome. I DO wheelchair sports, because every sport I do in a wheelchair IS a wheelchair sport; I don't need to segregate myself to be an athlete.

Elizabeth' Racing Wheelchair, she gets to see Mr. Bad's ass and is ALMOST ready to race.

I had a (very) bad night and got under six hours sleep which wasn’t good. But I needed to be up at that track at 10:00 am if I wanted my racing chair!

Linda dropped me off and parked the van we had to brought to bring the chair back with us, and I saw a person with a name tag I recognized: It was J. the BC wheelchair race series coordinator and another female, who I assumed worked with BC wheelchair sport. Both were standing, able bodied and in late 20’s/early 30’s. I introduced myself to J, who said that they had brought the chair and then talked over my head to the other woman and they went for coffee. (yeah, that's how it went)

There were a lot of people in wheelchairs and I talked to them and they were a team of 8 from Sask, including one racer who wouldn’t be because she was sitting there in her chair with a dislocated hip (she said she was "official cheerleader"). But they seemed very friendly and one guy and I who seemed to have the same seat cushion size (18 inches wide) talked about ‘the shrink factor’ and how after being in the chair you kind of don’t have the same dimensions and how that was happening to me and he was talking about getting a new chair because of it. And I was really sort of awed that all these people from Sask had FLOWN in to Victoria (which cost about as much as going to hawaii, at least $250 for the Vancouver to Victoria part) to participate in this track meet. But these were competitors and this was the competition. Sadly, the entire BC contingent was….two. And I was later to find out that one of those was the coach who also did EVERY race, which almost made me go, “Hey, put me in a race, I don’t know actually how to propel the wheelchair racing thingy but BC should have a better showing than that.”

The track had about three different track meets going on, so there were 8 year olds doing a 1500, and then adults doing a 100 meters and then a wheelchair event. In the wheelchair events, they run everyone of one gender together but then, I believe you are separated according to your classification. So for example, in females two paraplegics might race each other for first and second and then the person coming in third is a quadriplegic so they actually are first in their classification. Of course the able bodied announcers don’t know that and are kind of irritate to hear patronizing the quads who are coming in slower. Then I met N. from team BC who I assumed had CP as he stepped out of his racing chair, stood up and walked over (not to talk to me, to talk to someone else).

Linda and I cheered on James, (the head coach) and N. who was the ENTIRE BC team wearing blue and I cheered for green because there were actually females on the team (like five!). We tried to talk to J. repeatedly about the chair but she had some other reason to be elsewhere and it was much like this week on the phone trying to find out what would happen or when; it was always “later” but she did give us the rental and application form. And then said, “James would deal with it.”

I wheeled around to the finish of the 100 meters so I could see what wheelchair racing looked like as they were doing the 100 meter for men and women. You can see here two of the women who are para’s and are sitting on their legs (I told them on the phone due to the surgery I had on my knees if I try that, my ligaments holding my kneecap will rip - so I don't get THAT kind of chair). It seems the more you are hunched down, and less resistance for wind, the more efficient – also, those 4 spoke carbon wheels cost $1500, so I guess these are serious women racers.

They race well and straight and here is another racer in the same race using aluminum flat wheels and she has drop legs, like my chair but hers are set back (you can see her nail polish on her toes).
After them came the men and here is a BC male racing in his invacare Eliminator racing wheelchair (like I have but the next model up - mine is the older model. And he has expensive spokes, and uniform!).
It was after this that James was going to show me the racing chair they brought for me and how to use it. J. was taking off to lunch it seemed and was going to be back at 3:00. She had actually been in town since Thursday, I think she said. I was going to be sleeping at 3:00 becuase I had been up past 3:00 am. But to put it in the nicest way possible she and the other female and some others were very cliquish and had no real time for me and I felt very much poor cousin asking for a bit of gruel. It turns out that like much of disability world, there is a WAY things are supposed to happen and like when I called up VIHA over a year ago and asked for help and they sort of treated me the same way until an MS nurse FORCED them to intake me. Well, BC wheelchair sports says how they ACTIVELY recruit (it is even in a newspaper article), and how they promote. But what that means is they go to the provincial center for spinal cord i